La percezione degli operatori sanitari sulle cure palliative come mezzo per promuovere la qualità di vita dei pazienti e prevenire le richieste eutanasich / Healthcare workers’ perception of palliative care as a means to foster patients' quality of life and to prevent euthanasia requests*

2019 ◽  
Vol 68 (1) ◽  
pp. 25-39
Author(s):  
Konstantinos Mastorakis ◽  
Massimo Continisio ◽  
Maria Francesca Siotto ◽  
Luca Navarini ◽  
Franco Carnevale ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Well Being ◽  
Life Care ◽  
National Monitoring ◽  
Spiritual Well Being ◽  
Hospice Workers

Nel 2010 è stata emanata in Italia la Legge 38, che punta a migliorare formazione e tirocini nel campo delle cure palliative, sebbene al momento non esista un sistema nazionale di monitoraggio di tali pratiche su scala nazionale. A livello internazionale l’eutanasia si è andata sempre più configurando come trattamento possibile fra le cure di fine vita, mentre in Italia resta formalmente illegale. Esistono alcuni studi italiani sulle prospettive dei pazienti rispetto alle cure palliative e all’eutanasia, ma la letteratura relativa alla percezione degli operatori sanitari palliativisti è esigua. Scopo del presente studio è l’indagine di tali percezioni, sia rispetto alla qualità delle cure palliative sia al potenziale ruolo dell’eutanasia nelle cure di fine vita in Italia. La ricerca è stata condotta in tre hospice romani. È stato sviluppato e somministrato un questionario con 75 item graduati secondo la scala Likert a 5 punti, utilizzando come metodi di analisi l’analisi fattoriale e, per la parte statistica, SPSS. Il questionario è stato completato da 56 soggetti. Nella percezione dei partecipanti, i fattori rilevanti per la qualità delle cure palliative sono risultati sette: sofferenza fisica e sociale, benessere psicologico e spirituale, benessere emozionale, partecipazione alle decisioni, compassione, speranza ed empatia. Inoltre, le cure palliative ridurrebbero il desiderio di morte e di eutanasia. I fattori più importanti che emergono dal lavoro sono la sofferenza o il benessere sociali, fisici e psicologici. Gli operatori sanitari coinvolti nello studio non sostengono l’ipotesi dell’eutanasia e anzi ritengono che le cure palliative riducano il desiderio di ottenerla. ---------- In 2010, the State Law no 38 was enacted in Italy, seeking to improve palliative care education and training. There is currently no national monitoring system for palliative care practices in Italy. Euthanasia has become increasingly available internationally as an alternative amidst end-of-life care options, although in Italy this is not the case, and it is formally illegal. Although there are a few studies regarding patients’ perspectives regarding the issue of palliative care and euthanasia in Italy, there is limited literature focused on the perspectives of palliative care health care professionals. The purpose of this study is to explore the perspectives of hospice workers regarding both the quality of palliative care and the potential role of euthanasia in end-of-life care in Italy. This research was conducted with hospice clinicians in three hospices in Rome. A 75 item 5-point Likert scale questionnaire was developed and administered. Factor analysis was used, and descriptive statistics were performed using SPSS. Fifty-six respondents completed the questionnaire. From participants’ perspectives, there are seven significant factors explaining the quality of palliative care in Italy: social and physical suffering, psychological and spiritual well-being, emotional well-being, participation in decision making, compassion, hope, and empathy in care, while reducing patients’ desire for death and euthanasia. The most important of these factors regard social, physical and psychological suffering and well-being. Hospice workers in this study did not support euthanasia and felt that palliative care decreases the patient’s desire for euthanasia. * The manuscript was presented as an abstract in an International Congress on Palliative Care.

scholarly journals Enabling occupation at the end of life: A literature review

2015 ◽  
Vol 13 (6) ◽  
pp. 1755-1769 ◽  
Author(s):  
Katherine Mills ◽  
Angela Payne
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Occupational Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Well Being ◽  
Life Care ◽  
Palliative Care Teams ◽  
Community Environments

ABSTRACTObjective:Occupation, or meaningful activity, can contribute to the well-being and quality of life of all individuals. It is thus a logical tautology that occupation should be enabled for those at the end of life. Our present review examines current provision of these processes by Occupational Therapist, who can be much-valued members of multidisciplinary palliative care teams.Method:Following a literature search and critical selection, 10 global papers were identified examining occupation and occupational therapy at the end of life in the acute, hospice, and community environments.Results:Universally, there appeared to be a dearth of therapists working in end-of-life care. Provision of palliative care in hospitals was found to be compensatory or rehabilitative. Hospice therapy emerged as pleasingly occupational, though the number of hospice places was disappointingly few. Community literature was sparse, so it proved challenging to draw definitive conclusions. Promising research refracted light on occupation at home; however, it also revealed stretched domiciliary services, where clients are not well informed about the potential scope of occupational therapy.Significance of Results:A “good death” involving a quality end-of-life experience is the foundational goal overarching all therapy and medicine in the provision of palliative care. Arguably, an occupation-focused approach provided by therapists meets client needs to enable meaningful experiences in the limited time left to them. Current occupational therapy practice environments are not necessarily achieving these goals in commensurate fashion. There is a need to promote the role of occupational therapy and circumscribe what therapists can offer. Further research is necessitated across all environments and future funding for therapist positions in palliative teams. End-of-life care can be complex and challenging; however, therapists can facilitate fulfillment of client-centered occupational goals. In engaging with personally constructed nuances of meaning, quality of life can be improved in those deserving of a significant and emotionally rich daily existence during their final days.

Systematic Review for the Quality of End-of-Life Care for Patients With Dementia in the Hospital Setting

2018 ◽  
Vol 35 (12) ◽  
pp. 1572-1583 ◽  
Author(s):  
Felicity Moon ◽  
Fiona McDermott ◽  
David Kissane
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Hospital Setting ◽  
Psychosocial Care ◽  
Life Care ◽  
Hospital Patients ◽  
To Receive

Background: Patients with dementia may receive suboptimal end-of-life care in hospital settings reflecting broader debate around the palliative status of dementia syndromes. Objectives: To synthesize literature describing the quality of end-of-life care for patients with dementia dying in hospital. Methods: An integrative review assessed the quality of 26 articles concerning medical, nursing, and psychosocial care of patients with dementia dying in hospital settings. Results: Literature reflects a growing awareness of the need to consider a palliative approach to end-of-life care for patients with dementia in hospital. Patients with dementia are less likely to receive aggressive care at the end of life, but provision of palliative care interventions is inconsistent. Health-care professionals highlighted the need for greater education around identification and management of problematic symptoms at the end of life. Engagement of family caregivers is essential in optimizing end-of-life care, and further research is required to ascertain their experiences around decision-making. Conclusion: Although patients with dementia appear to receive less aggressive treatment at the end of life, the provision of palliative care and symptom management may be inadequate.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

scholarly journals END-OF-LIFE CARE PREFERENCES AND WELL-BEING IN LONG-TERM CARE RESIDENTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks
Keyword(s):  
Quality Of Life ◽  
Positive Affect ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Well Being ◽  
Life Care ◽  
Term Care

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.

scholarly journals The facilitators and challenges of dying at home with dementia: A narrative synthesis

2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Eligibility Criteria ◽  
People With Dementia ◽  
Care At Home ◽  
At Home

Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia. Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia. Design: Narrative synthesis of qualitative and quantitative data. Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017. Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’. Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.

Cultural Issues in Palliative Care

2018 ◽  
Author(s):  
Sriram Yennurajalingam
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cultural Differences ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Cultural Issues ◽  
Medical Interpreter ◽  
Improve Patient

Culture play a significant role in the care of patients receiving Palliative care. Understanding and managing cultural differences in end-of-life care is important as misunderstanding can result in under-treatment and unnecessary suffering for the patient and their care providers. Therefore better understanding can improve patient–physician communication and potentially improve patients’ quality of life, coping, and facilitate patients to make informed decisions and set appropriate priorities with regard to treatment and end-of-life care. This chapter discusses key cultural issues in palliative care, including the concepts of nondisclosure, the importance of the use of a medical interpreter, and the importance of an interdisciplinary team.

scholarly journals ‘. . . and then no more kisses!’ Exploring patients’ experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care A mixed-methods study

2019 ◽  
Vol 34 (2) ◽  
pp. 219-230 ◽  
Author(s):  
Maria Heckel ◽  
Alexander Sturm ◽  
Stephanie Stiel ◽  
Christoph Ostgathe ◽  
Franziska A Herbst ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
End Of Life ◽  
End Of Life Care ◽  
Multidrug Resistant ◽  
Life Care ◽  
Hygiene Measures ◽  
Patients Wishes

Background: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients. Objectives: To integrate patients’ perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms’ diagnosis, protection and isolation measures on their well-being and patients’ wishes and needs regarding their care. Design: A mixed-methods convergent parallel design embedded quantitative data on the patients’ multidrug-resistant bacterial microorganisms’ trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. Setting/participants: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. Results: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms’ diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients’ quality of life. Patients’ wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. Conclusion: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms’ diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms’ policies of hospitals.

scholarly journals Establishment of Palliative and End-of-Life Care Services in Sri Lanka

2019 ◽  
Vol 34 (s1) ◽  
pp. s127-s128
Author(s):  
Clifford Perera ◽  
Udayangani Ramadasa ◽  
Chandrika Wijeratne ◽  
Panduka Karunanayake ◽  
Thashi Chang ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Sri Lanka ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Task Force ◽  
Steering Committee ◽  
Life Care ◽  
Care Services

Introduction:Sri Lanka has a rapidly aging population with an exponential rise in chronic morbidity. There had been no parallel development of palliative and end-of-life care-specific approach in health care.Aim:To implement sustainable palliative and end-of-life care services in Sri Lanka through the existing systems and resources by advocacy, collaboration, and professional commitment.Methods:Sri Lanka Medical Association established a volunteer task force for palliative and end-of-life care (PCTF) in October 2016, which comprised of multi-disciplinary health care professionals, legal fraternity, and civil society. PCTF identified the need for sensitizing the general public on the importance of palliative care, for standard guidelines and formal training for practicing health care professionals engaged in hospital and community-based palliative care. These needs are addressed through activities of PCTF in collaboration with the Ministry of Health.Results:Representing the National Steering Committee of Palliative Care, the members of the PCTF were instrumental in developing the National Strategic Framework to fill the major gap of affordable quality palliative care in the country. PCTF also published the “Palliative Care Manual for Management of Non-Cancer Patients” as a preliminary guide for health care professionals. The draft document on the End-of-Life Care Guidelines has been formulated and is currently being reviewed by the relevant medical and legal stakeholders. PCTF has organized CME lectures on palliative care all over the country for health care professionals, and also conducted lectures, exhibitions, and mass media programs to sensitize the public on palliative care.Discussion:Within a brief period, PCTF has played a key role to recognize palliative care by contributing to policy making, training, and public sensitization in palliative and end-of-life care in Sri Lanka.

Early palliative care is associated with improved quality of end-of-life care for women with high risk gynecologic malignancies

2017 ◽  
Vol 145 ◽  
pp. 26
Author(s):  
N.S. Nevadunsky ◽  
C. Zanartu ◽  
P. Pinto ◽  
R. Barrera ◽  
A.R. Van Arsdale ◽  
...  
Keyword(s):  
Palliative Care ◽  
High Risk ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Gynecologic Malignancies ◽  
Early Palliative Care

scholarly journals Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients

Cancer ◽  
2014 ◽  
Vol 120 (11) ◽  
pp. 1743-1749 ◽  
Author(s):  
David Hui ◽  
Sun Hyun Kim ◽  
Joyce Roquemore ◽  
Rony Dev ◽  
Gary Chisholm ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
Life Care
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